fatigue

[cyclist49]

My fatigue is very bad . has anyone any experience of medication that helps

[suzie44na]

Hi , I am the same good question. I am always tired, I even wake up tired. My neurologist said it is common in ataxia and no one has said what will help it. I think in my case it also has something to do with my mitochondria because my muscle biopsy has shown mitochondrial cytopathy. I wish there was a cure, that would be great. Take care

Suzie

[cyclist49 in reply to suzie44na]

Thanks Suzie - I have been active hillwalking and cycling until diagnosis , but now I am really pleased to have bought a compact mobility scooter which I use every day and can put in the car boot - it is a Supascoota Sport

[suzie44na in reply to cyclist49]

That is great that you have a supascoota, I have the shopper supascoota, they are great scooters, they give you so much freedom. I have had mine for about seven years now and don’t think they make the shopper one now. Enjoy your scooter, have fun 👍

Suzie

[nigelrheath]

hi cyclist and Susie

Fatigue is a very common symptom at the start of ataxia, for some it remains an issue.

As the brain rewires itself it uses a lot of energy. Most of our life before ataxia our energy was efficiently managed by our brain and body. In my experience with SCA6, a spinocerebellar ataxia, although fatigue is more manageable now it’s there if I push too hard.

The way through this is first to accept this is the way ataxia progresses. Then you need to be clear how to best use what energy you have. I know there are days when the answer is ‘what energy?’

Set yourselves small goals or targets. Some days you will miss completely! Be kind to yourself and gradually you will be able to do more and your brain/body will work with you not against you.

Hope this helps.

Nigel

[cyclist49 in reply to nigelrheath]

Thanks for reply Nigel - sensible advice-

[7151]

I think unfortunatly thats part of antaxia I take lots of vitamines especialy thé b but sometimes my eyes wont stay open

Be worth having à blood test to make sure your Iron levels OK

[cyclist49 in reply to 7151]

Thanks 7151

[penelope2]

Hi, have you tried CO Q10? Supplements will not work over night but could take weeks. Online is the best source, also magnesium might help. Research the best bioavailable types because they are better absorbed by the body but probably more expensive.Good luck

[cyclist49 in reply to penelope2]

Thanks Penelope - I'll discuss with my consultant when I see him in August